Not So Liberating

This study was also conducted by someone who really wanted it to work, Dr. William Pryse-Phillips, a professor emeritus of neurology at Newfoundland’s Memorial University.

Patients who underwent the so-called liberation treatment for multiple sclerosis experienced no measurable benefit from the procedure, a study commissioned by the government of Newfoundland and Labrador found.

They couldn't find one person who benefited from "Liberation" one year after the procedure out of 30 participants. Not even in the self-reports of the patients themselves. That hardly appears to be a procedure that every person with MS should be undergoing at the provinces' expense.

And the outcome of this study, as limited as it is, leaves me wondering if there isn't a placebo effect - especially when the self-report benefits seem to tail off 3 months after the procedure - and why the people who didn't have a recurrence of clots or blockages did just as well as those who did. Like the doctor asks at the end of the article

"...under Zamboni’s theory, those who experienced the closures should have had poorer results than those who didn’t."

The more investigation that is done on this procedure the more I am convinced that MS will not be cured by a single drug, procedure or therapy. It's just too complex, it's origins so vague, that it's not going to be a magic silver bullet that solves the riddle.

My money is still on stem cells. I'm hoping that one day I can just trade in my whole immune system for a new one, and then use gene therapy to get rid of the damage.

One Week

I've done 8 shots now. It's still frustrating me to give myself shots that I have to look at, even with the auto-injector. I like the speed with which the auto-injector administers the Copaxone. I find that straight from the syringe is just too fast.

I'm pleased with my progress at getting this shot integrated into my life though.

One thing I am NOT thrilled about is the CCSVI advocates clogging up my comments, following me on Twitter and sending me messages on Facebook.

I'm really happy that all these willing victims are ready to martyr themselves because it's going to take at least 5,000 people running off and getting the "liberation procedure" before we find out what the stroke risk is. Since solving the problem of my wonky left leg and intention tremor IS NOT worth the risk of being left in a wheelchair, a vegetable or dead, I'll wait, thank you very much.

I'm not going to advocate that the test and the surgery start taking place here in Canada unless every single person who has it done kicks in 2/3 the cost and signs a waiver saying they can't sue for malpractice because the surgeon didn't know how to do the procedure and it was so experimental they didn't know the inherent risks.

A vascular surgeon that my neurologist at UBC Hospital talked to thinks that the risk of stroke could be as high as 1 in 100 to 1 in 5000 depending on where the narrowing/blockage is.

Neither of those numbers is worth the risk to me right now. I want to see more study, to start training for the professionals to diagnose CCSVI and the surgeons to treat it, and to find out if the risks outweigh the benefits.

In the meantime I'm doing Copaxone and doing my physiotherapy and yoga. I know for sure that those things won't kill me.

I Less Than 3 my Neurologist

So, we're at the annual follow up/seeing how the mito worked phase of our relationship. We both agree that I am doing and have done remarkably well. Here's all the news that's fit to print:

1. I still have some residual optic nerve damage (but nothing to worry about because my vision is 20/20) and weakness, uncoordination and spasticity on my left side (but again nothing really to worry about because my gait is generally good and I haven't needed a cane in quite some time).

2. I am being sent to the treatment patient's group on January 15 to learn how to manage the use of needles/auto-injector because on February 1, 2010 I go on Copaxone.

3. This is, of course, if we don't decide to do another round of mitoxantrone (Novantrone) around that time because...

4. There's either a oddly shaped blood vessel where my spinal cord meets my brain stem, an old lesion that didn't show up very well on my non-tracer material MRI last year that is now showing up on my tracer material MRI now, or it's a brand new lesion.

If it is a brand new lesion I'm getting one more mitoxantrone treatment. My MRI is being sent back for "reinterpretation" given my neurologist's concerns. I won't find out about that until the new year.

Even if we decide to do one more treatment, my doctor is getting all my Pharmacare stuff set up for February so I can start then. If it's delayed another 3 months, we won't have to do the paperwork then I can just start.

5. I my disease burden has decreased minorly, and my MS doesn't really appear as individual lesions, though I counted 5 very distinct spots as we viewed it together.

So that's the long and short of it. I'm doing as well as really can be expected for someone with relapsing-remitting MS with residual deficits as a result of a profound relapse almost a year ago.

Not looking forward to needles, but if it keeps me from a relapse for even a day longer than I would've had without it, I'm okay with that. With help from Pharmacare, it shouldn't be too much of a financial burden either.

Also,

a day or two ago I posted this story, about the University of British Columbia (UBC) putting together a proposal to study CCSVI at the clinic where I am a patient. I asked my neurologist about it and she was interested, but cautious.

She was pleased to hear that I don't think that this is *THE ANSWER* but perhaps *an answer* and that I was still confused by what CCSVI doesn't explain. She did write in my file that I was interested in being a participant in any study that does happen - but she did caution me on a couple of things.

a) This proposed study has no funding, no protocol and no ethical review yet. It's going to be be March before they even know how many people they are going to let in, let alone the scope of the study.

b) A vascular surgeon at UBC who has done angioplasty on veins, but not the inner jugular or azygos (chest) veins, thinks that the possibility of stroke or stroke leading to death with the "Liberation Procedure" could be as high as 1 in 100. Angioplasty on other less dangerously located veins have a stroke/death odds of about 1 in 1000 to 5000.

Sobering odds, really.

So that is the State of Lori's Brain n' such for the fiscal year ending December 31, 2010. Profits and output have improved 100000000000000000000000000000000 times from this time last year.

Questions

I posted this terrific post by Wheelchair Kamikaze regarding CCSVI to a couple of Facebook groups. This post is thorough and thoughtful and explains better than I could why I am cautiously optimistic about CCSVI and the "Liberation procedure" but not completely sold.

I was then attacked via Facebook messages by people who were completely happy to drink the Zamboni Flavor Aid and were *ANGRY* at me for not being as thrilled and ecstatic about the *cure* as they were.

Oh "ye of little faith"! I, like a lot of us with M.S., am very excited about this treatment if only for the spotlight that this discovery casts on this disease! Don't dash our hopes with your negativity!

That's the only one I didn't delete. The other ones were just fucking rude, like I was purposely trying to piss all over their day by pointing out the obvious unknowns about CCSVI!

I was told that I must be so incredibly disabled that I've just lost all hope and now I can't stand to see other people happy.

I was told that I just needed to get on the MS Recovery Diet and I'll never have an attack again.

I was told to "Think Positively", "Accept Jesus into (my) heart!" and "Count my Blessings! (I'm) not Dying!"

(All Y'all KNOW how much I love being "Brightsided". Fucking gives me the warm fuzzies ALL OVER.)

To recap, all I did was share a well thought out and researched post about CCSVI and then people felt it necessary to send me messages trying to make me feel bad for not believing what they believe.

WHY do people do that?

I disagree with a LOT of what people post to the internet (I have a Twitter account for crying out loud.) but I don't find it necessary to privately message them to tell them that they are wrong for what they think or believe about their own medical condition, even if they are wrong and I know that they will suffer for it. ;)

It's not like I'm some Glen Beck fan spouting crazy in public.




PS.

I'll be back tomorrow, it's a big day.

CCSVI and MS

I'm afraid that a whole lot of people are going to be disappointed. There is absolutely no evidence, even Dr. Zamboni's research, that this procedure works for everyone.

Dr. Zamboni says that it works for people who's narrowing of the veins doesn't come back but what wasn't on the show was that 80% of the people who have had this surgery in California have the narrowing come back. Their symptoms may be less severe, but they're not "cured".

There's also a side effect of neck and shoulder problems for some people that should also be investigated before we start handing out this surgery for everyone and their brother with MS.

There's also no evidence that the procedure does anything to help with damage to the brain or undoing scar tissue. This answer also doesn't solve the mystery of MS's geographic and gender biases, the genetic factors, the connection to Guillain–Barré or Epstein-Barr, or even gluten, egg or dairy allergies or sensitivities. This very simple answer doesn't even begin to unravel the web of possibilities with MS.

Please, for the love of Pete, don't pin your hopes on this being "THE ANSWER". It is probably more like "one of a few answers".